"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


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The Big Push

I’m kind of over getting told to throw my hands up in the air
So there
We’re on each other’s team
~ Lorde, Team

Screws in shoes

Screws in shoes

Spring is coming very slowly to Minnesota, in drips and drags, which means that soon I can begin running outdoors again. In anticipation of still snowy paths and icy patches, I modified an old pair of shoes to prevent me from slipping. To make your own, predrill holes in the soles and then insert small screws until they are about ¼” from being completely screwed into the shoe. I have found that this modification works better than boots or Yaktrax for gripping slippery places of the trail.

Last fall I promised my boyfriend that I would stop running half marathons. When I returned to his house in ice cube form after my late October one, he took me in with one glance and said, “You don’t look good.”  I told him, “I tore the bottoms of my feet on the big hill after Mile 11,” to which he grimaced and replied, “I don’t think you should run any more long races.” Upstairs in the shower, sitting with my head between my knees while the hot water warmed me up, I told myself that he was right. Why do I do things like this? Why race? Why compete? What am I trying to prove?

The point is not to compete or prove anything. I run because I love the combined mental and physical challenge. I knew the hill was coming after Mile 11, and, having run it in previous races, I knew what I was in for. The elevation increases by 100 feet within half a mile, and most of us choose to run it. I pushed myself because I knew after the hill I had less than two miles to the finish. At that point it was simply a matter of putting one foot in front of the other until the end. So close, and so tired, but nothing compares to crossing the finish line and knowing that I had accomplished my goal despite the voices in my head and the physical ache. Now spring is coming, fall is far behind me, and I am once again ready and eager to begin training.

“I’ve never had anyone do this that quickly.”

Our clinical study site.

Our clinical study site.

That statement was not made in response to my running. I’m a middle-of-the-pack kind of girl, each and every race. My son Tim recently participated in a clinical study on memory. This study is part of an ongoing research program by a psychologist at the University of Minnesota who studies the relationship between attention and autism. For an hour of Tim’s time once or twice a year, he earns $10 each session and enjoys being the center of attention. He does computer simulations, looks through diagrams, adds and subtracts, and recalls images and patterns. Everything is timed which helps provide statistical information. In his most recent clinical study, I overheard the doctor make the above comment when Tim was doing a number puzzle.

The clinical studies are usually done at our home or at the University. We tend to flip flop depending on our schedules. The first time our doctor came to our home for a study was approximately three years ago when Tim was in seventh grade. At the end of the study, she took a few minutes to talk to me with her recommendations. Her advice was that Tim should be taking college courses, not withering away in a middle school classroom. She stressed that intellectually he was ready for college and keeping him where he was would not be beneficial to him. I agreed but didn’t know how to start the conversation with the staff at the public school he attended.

This is an example of one of the patterns Tim had to copy using blocks.

An example of a pattern Tim copied during his clinical study using blocks. You can purchase this and other puzzles at Marbles located at the Mall of America.

Now Tim is in tenth grade and will begin taking college courses next fall in Animal Science as part of his regular school day. At our most recent IEP meeting, his teacher, staff, father, and I discussed him starting college early. We were all in agreement, and this would not be happening if we were not all on the same team. Tim’s teacher commented that she is reaching the point where she has nothing left to teach him, and it is time for him to begin transitioning to college. Tim will be taking one college course each semester, and by the time he graduates from high school he will already have four college courses in Animal Science on his transcript.

I wasn’t sure any of this would ever happen. When Tim started middle school three years ago, I participated in some workshops for parents of special needs children that his school generously set up. One moderator made this remark to our group that has since tumbled around in my head:

“Your child is not entitled to the best education possible. Rather, he or she is entitled to an education that is appropriate for his or her needs.”

As difficult as this is to hear, it is true. Reading it in writing makes me cringe. Not every person is meant to go to college, just as not every person is meant to get married, have children, travel the world, be an athlete, raise chickens, you get the point. I started to hold the thought in my heart that Tim may not go to college. Mentally I was Mile 7-8 of 13 miles, where you’ve come a long way, but you’re starting to feel tired, your feet are starting to ache, and you are well aware you still have a long way to go toward your goal.

Now we’re at Mile 11 with Tim regarding his childhood. The final part is one last push toward college, and then he enters the next phase of his life as an adult. The hill I had been fearing for years is no longer insurmountable. We just have to dig deep and run up it. Tim has come so far, and both his teacher and I have seen enormous mental and emotional maturity in him this past year. Even though Tim is nearly good to go, this is no time to rest. We have SATs and ACTs to prepare for, colleges to visit, applications to write, and choices to make. And what an exciting and delightful time it will be.

Here are some websites that may be helpful in researching colleges for students who fall on the autism spectrum:

  • AHEADD – Achieving In Higher Education (http://www.aheadd.org/): Provides coaching, mentoring, and self-advocacy for students with special needs.)
  • USCAP – US College Autism Project (http://www.usautism.org/uscap/): Provides support for students on the autism spectrum to help ensure they have both a successful college experience and a successful transition to the working world after graduation.
  • ISER – Internet Special Education Resources (www.iser.com): List of college programs to help students with the transition to college, independent living, college planning, and much more.
  • College Lists (http://collegelists.pbworks.com/): Nationwide list of colleges that have support programs for students with a former diagnosis of Asperger’s. Augsburg College (http://www.augsburg.edu/) is one of them if you live in the Twin Cities.


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Driver’s Education

The greatest gifts you can give your children are the roots of responsibility and the wings of independence. ~ Denis Waitley

Tim is in his last week of his Driver’s Education course. In Minnesota, when you turn 14½ years old, you become eligible to take 30 hours of classroom instruction on how to drive a car. When you finish the course and turn 15, you take a computerized examination at your local Department of Motor Vehicles where, if you pass, you will be issued a driving permit. The driving permit lets you learn how to drive with a licensed adult in the car, which is good practice for taking the exams necessary to earn your Provisional License at the age of 16. In Minnesota, you can earn your Regular Class D License at the age of 18.

What just happened? When did my baby boy grow up into a hairy teenager?

What just happened? When did my baby boy grow up into a hairy teenager?

My son has been looking forward to his time in his life for several years now. From the time he was small, and especially after he was formally diagnosed with Asperger’s, I have raised Tim to be as independent as possible. Sometimes it has been painful for me to watch him struggle, but his struggles are necessary to help him grow into a fine young man who believes in himself and has the ability to reach his full potential. As a result of the attitude I instilled into my child, he has approached life looking outward. The parent-child relationship is the only human relationship, to my knowledge, where the end goal is separation.

And separate we do and have been for the past three weeks, three evenings a week, for three hours. I get home from work, take a minute to sit down, and then I jump back into the car with Tim to drive him to Safeway Driving School. Since classes run from 6-9 pm, the first week I rushed home to make sure I fed Tim supper before leaving. One afternoon, however, Tim informed me that I did not need to feed him supper that night. I asked him why, and he said he was going to walk over to one of the fast food restaurants near his driving school during their break to buy supper. While saying this, Tim pulled some money out of his pocket and further informed me that he has his own cash and doesn’t need any of mine. When I offered to cover his meals for him, he declined at first (independent boy!) but after a few nights of seeing how quickly meals out add up, he accepted my offer (smart boy!).

With the exception of one evening, Tim has been doing fine in class. Fine during the break where he crosses a parking lot to purchase his supper, and fine with the schedule. The only hiccup was one night when I picked Tim up at 9pm and he threw me a funny look as he got into the car. I asked him “What’s up?”, which is a good way to phrase to my autism spectrum son “What on earth happened this time? Why did you lose control of yourself? Why can’t you just sit quietly like the other students? I hope no one called the police.” Tim’s reply was, “DRIVE! I’m really hungry! I forgot my money tonight!” I laughed, said how unfortunate that was, that I would be hungry too, and we drove home where I made him the fastest supper I could scrounge up out of the refrigerator.

Tim will be finished with the classroom portion of driver’s education at the end of this week. For me, I have had 30 hours to myself in the evening over the past three weeks. What is a mom to do? Here is a list of what I have accomplished:

  • Bought a new drill & hung shelving and a clothes-drying bar in my laundry room
  • Purchased picture frames, framed photographs, sorted through old frames
  • Weeded gardens, both vegetable and flower
  • Made the following jams and preserves: Pineapple, Strawberry, Blueberry, Raspberry, and Peach-Nectarine
  • Made salsa
  • Cleaned garage
  • Went through all kitchen cookware, knick-knacks, storage containers, and donated four full boxes to Goodwill
  • Ran on Minnesota’s Gateway Trail to begin training for three upcoming races this fall; discovered that horses on the trail enjoy keeping pace with the runners 🙂
  • Mowed lawn
  • Pulled out and cut up dead trees and branches from my backyard, burned in our fire pit to make ashes for garden fertilizer
  • Steam-cleaned carpets and deep-scrubbed bathrooms
This is one way to spend an evening while your child is at driver's ed.

This is one way to spend an evening while your child is at driver’s ed.

Tonight I am out of things to do and may spend the evening with a bottle of wine and Netflix. For my fellow vinophiles, there is still time to head out to The Cellars and take advantage of their summer sale. Through the end of July, their vintage wines are the same percentage off as the day of the month. This means that on July 31, you will save 31% on a large selection of wines in their shop. Several ports are also included in the sale.

Is your Minnesota teenager ready to learn how to drive? Here is some information that I found useful on how to go about obtaining a driver’s permit for Tim.


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The Wash

I felt as if I had washed a tub full of sheets but not got them clean. ~ Girl With A Pearl Earring, Tracy Chevalier

This describes how I feel raising a child with special needs. You do everything properly, based on a combination of experience, instinct, and advice, only to discover that nothing is as it should be. Then you do everything again, expecting a different result, only to find the same challenges waiting for you. Ultimately, you exhaust yourself with the effort of trying to produce the wanted result in an environment where what you want to do is not possible. Adjustments on your part as the parent become necessary.

While autism doesn’t wash off, as Tim grows older, life becomes more manageable for him (and me). The key is to leverage his strengths instead of trying to change his nature. We had a meeting with his teacher and special education support staff at his school last week, and for once I had nothing to say. This is a good thing because if I go into one of these meetings with questions and concerns, and those go unanswered or pushed aside, the ugly, harsh, protective momma bird side of me that is tucked well away 99.9% of the time flares out in a split second, scorching everyone in its path. However, our most recent meeting was entirely unlike that. Tim has made so much progress this school year that I sat, flabbergasted, as his school staff had nothing but positive remarks to make.

Tim’s teacher mentioned that Tim becomes short when some of his classmates don’t understand or follow her directions. She said that sometimes she will be in a huddle with Tim’s classmates, explaining something to them over and over again, and finally Tim will have had enough, stick his head into the huddle, and tell his classmates what to do, how to do it, and how ignorant they are behaving. His teacher was laughing as she told us this incident. Working full-time with special needs teenagers requires the ability to emotionally bounce, and this often means good-naturedly keeping the day-to-day classroom situations as light as possible.

*Deep breath on my part because I know that Tim knows better than to speak to other people this way.*

Here’s what we decided to do. I knew that we needed to leverage rather than force Tim to change, because he ain’t changing. He is who he is. I suggested that what I see is a feature of Tim that can be used as a strength. He definitely had leadership abilities, and his classmates listen to him. What we, as the adults in his life, need to do is help him develop these abilities as positive parts of his personality. Not everyone is meant to lead. You need followers, too, but Tim has never been a follower. He, like a lot of people with Asperger’s, takes in an entire situation instantanously, which means that he is ready to go in the blink of an eye. He doesn’t need time to digest instructions or decide what to do. He knows it immediately. As a team we decided that next school year Tim will be ready for one of the many jobs his school offers. For example, he could work in the cafeteria, help with janitorial tasks, or assist in the school store. Starting him out on small tasks will help boost his self-confidence and hopefully start to develop his leadership traits positively.

The evening after our meeting at school I stopped by Daniel’s house for a few hours to help him set up for Peanut’s seventh birthday party. Yes, Peanut is seven years old. I came into his life when he was 2½, and how time does fly. This year Peanut wanted a Lego-themed birthday party, so we had Lego birthday decorations, Lego presents, and a Lego cake. If your little one wants a Lego birthday party like Peanut did, you can purchase a Lego party kit through Target’s website (www.target.com). The options include Lego Star Wars and Lego City. Anyway, the first task I tackled when I arrived at Daniel’s house was assembling Peanut’s Lego birthday cake.

Lego cake.

Lego cake.

After mixing up the frosting colors, I started smiling as I began icing the bricks. I knew the dark colors would temporarily stain all the children’s teeth, which always makes for a fun event. It made me of the quote I read in Tracy Chevalier’s book and how some things in life are easier to tackle than others. Since Tim and I had the weekend together, I wasn’t able to actually attend Peanut’s party the next day, which left Daniel in a tizzy because he wasn’t sure what he was going to do with six hyperactive first grade boys for two hours. Before I left, we put together a couple of Lego-themed games and I told him if all else fails wing it and let them do free play. When I saw him Sunday afternoon and asked him how Peanut’s party went, he told me that the cake frosting stained all the boys’ teeth, and they kept smiling at each other to show off their blue, green, and red grins. No one chose the brick frosted with white for some reason 🙂 . I told Daniel how happy I was that Peanut had a wonderful birthday party, and that the frosting colors would wash off the boys’ teeth.

As Autism Awareness Month is drawing to a close, I wish to give encouragement to all parents, siblings, friends, and caregivers of people with autism or an autism spectrum disorder. Sometimes there are no easy solutions for the challenges that our loved ones face. The situations that arise from having special needs don’t wash away, and I don’t think they should be expected to. People come in all shapes, sizes, colors, and functionalities, much like Lego bricks, so why would we want to change that? Tim likes himself just as he is, as do I, and I am excited about helping him develop his strengths as he is becomes a young adult.


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Little Free Library

A book is a version of the world. If you do not like it, ignore it; or offer your own version in return. ~ Salman Rushdie

Our building's little library.

Our building’s little library.

The building where I work has a lending bookshelf. People have donated books of all sorts…a year ago I was having a particularly stressful week at work and picked up Harry Potter And The Sorcerer’s Stone by J.K. Rowling. I needed something fluffy and fantastical that I could read before bedtime to clear my head and help me fall asleep. Harry and his compatriots did the trick, and upon returning the book I donated a few of my own that had been lying around my home.

I perused the shelf last week on my way to a friend’s office and noticed that there had been a lot of turnover in the books. The same approximate number of books are always on the shelf, but the subject matter changes depending on what people feel like reading and what people feel like donating to our little library. Since most of us who work in the building are scientists, a large proportion of the books are about fantasy, science fiction, and philosophy.

The Stillwater Lift Bridge, heading east into Wisconsin.

The Stillwater Lift Bridge, heading east over the St. Croix River into Wisconsin.

Unfortunately, if you don’t work for my company, you don’t have access to our building and our bookshelf. A non-profit solution exists, however, which originated across the St. Croix River in Hudson, Wisconsin and is rapidly spreading worldwide. The program is called Little Free Library (www.littlefreelibrary.org), and its mission is to promote literacy and the love of reading by building free book exchanges. A Little Free Library is an outdoor, weatherproof shelter that is maintained by a steward and contains books, all of which are free, that anyone can borrow. People are also encouraged to donate their books to the Little Free Library, and the beautiful part is that each Little Free Library is about people in the community sharing books with each other.

One more photo of the Lift Bridge over the lovely St. Croix River during the summer. Wisconsin is on the left and Minnesota is on the right.

One more photo of the Lift Bridge over the lovely St. Croix River during the summer. Wisconsin is on the left and Minnesota is on the right.

You can order a Little Free Library kit from their website or build your own if you are handy. Whichever way you choose to go, you can add personal touches to your Little Free Library before mounting it and filling it with the first round of books. In order to join the Little Free Library movement, you will need to register your Little Free Library and include it on the Little Free Library Map of the World. I used the online map to check and see if anyone has set up libraries in Stillwater, the small river town in which I live, and currently none are registered. This made me start thinking about the idea of setting one up in my neighborhood. Since the elementary school Tim attended is a two minute walk from our house, this also would give children and parents the opportunity to borrow books for free on their way to and from school.

You do not need to pay for a Little Free Library entirely on your own. You can raise funds through neighbors, friends, and family or coordinate with your local school district. The Minneapolis Public School District has started a program to institute 100 Little Free Libraries by and for neighborhood children who live in the city. Already 20 have been committed, and donations have been made by organizations such as the Boy Scouts of America, North Country Woodshop, Coffee House Press, Reach a Child, and numerous individuals. One of my friends from high school started a site on social media to generate the funds needed to purchase a Free Little Library for his family to post outside their home.

Between my home and Daniel’s we definitely have enough books to start a Little Free Library. My next steps will be contacting our school district and community to see how we can raise funds to purchase one. A Little Free Library is truly a gift that gives back in many different ways.

Interested in reading more? Here are some links to check out:

Little Free Library homepage:

http://www.littlefreelibrary.org/

For live coverage, watch the video CBS Minnesota made last fall about our local Little Free Libraries:

http://minnesota.cbslocal.com/2012/10/02/little-free-libraries-popping-up-in-twin-cities/

Little Free Libraries are going all the way to Africa:

http://www.booksforafrica.org/success-stories/books-for-africa-and-little-free-library-form-partnership-to-ship-little-libraries-to-africa.html

http://www.twincities.com/education/ci_22463530/hudson-wis-based-little-free-library-heading-africa

Little Free Library breaks Carnegie’s record:

http://blogs.citypages.com/dressingroom/2012/08/little_free_library_breaks_carnegies_record_with_2510_libraries_and_growing.php